Inferior Ven Cava Blockage to kidney level down to left leg

Hi, I am new to site but not to clotting. I am a 29 year female with 4 crazy kids(love them, they are just very very active) and I have been Clotting since I was 21. No one really seems to know why, and I am tired of searching for the right answer. I have been tested for all the known reasons, my body is just a freak of nature. It is something inherited, females on fathers side clot, but unknown causes.

I was just wondering if anyone on this site as any knowledge of Inferior Vena Cava Blockage. I have blockage 100% of the inferior vena cava at kidney level down to left leg. I do have collertal veins that have grown off my ovary to my left kidney. This is not the first massive clot i have had. My first one was from left ankle to kidney level then down to middle of right calf. For this new clot, I have been to Vascular Surgeon, had a venagram preformed but was unsuccessful due to complete blockage , but I did get to see the new collertal veins, pretty neat.

Results are basically do nothing....My meds are going to be played with, possible some new off market. I have been on lovenox off and on the past 8 years. Every doctor that has read my report gave the same response.. 'Oh crap", "this is dangerous, etc, etc.....

I was just wondering if anyone had a clot similar to mine and what type of treatment they are going though. I am not real comfortable with just doing nothing......

Hi missy,
Welcome to LADVT, as much as I wish that you did not have to be here...
I'm sure it has been ruled out but I'll ask anyhow, MTS is out? Probably one of the first places that any good doctor would had diagnosed...But then again, one can never tell...
The more research you (as a patient) do, the more you discover that the medical community is really at a standstill when taking about treatment of clots and pe. Last medication that most Dr. uses to fight DVT is more then 50 year old and they are still looking for it's replacement. If you look at PTS, the only thing they can do is tell you to wear FUGLIES (compression socks) and THAT is all, you ask any good Dr. who specialises in the research of PTS and they will say, "we need more money and more research".
and we keep on living...

Just out of curiosity, when you say "off market" meds, what are you talking of?

Hey Dero,

Yeah glad to be here too, I guess I have noticed over the years that no really knows a lot about blood clots, but every one is terrified of them( most doctors ). I have done my share of trails to boost research but it just isn't enough. It is really awful how doctors really are not on the same page with clots. I have been told from many of doc meds for life then there are others that don't agree and want you on nothing. Confusing...I am 'being treated' (lab rat)at a university hospital again, they seem to be the ones are not freaked about clotting and they think outside of the box instead of passing you off to the next doctor. I don't know yet what new meds they are going to put me on, but they will all be approved by the FDIC and they will be -New to the market- not off market:) I am waiting on blood work to come back. My body rejects coumadin, and now they think I am rejecting lovenox.

As for the MTS, no one has mentioned it. I have been through so many tests. I think they are just concerned about getting me back into range and they don't know how. The clot is just going to stay in my IVC and they are watch my kidneys. I looked for the correct answer for about 6 years of why I was clotting but it just became an expensive dead end with sore arms, and big fat 'I don't knows' and 'Cant help you'. It is tiring getting hopes up for a simple answer, simple fix. Treatment is going to be the same no matter why I am.

I cant wear the stockings they are annoying. My legs really don't swell that bad, if I am on them a lot they double in size. They do hurt though. I am a color turner, legs are dark purple by afternoon, then nails(some toes and fingers) almost black by night ,then back to almost normal by morning. The body works in crazy ways......

I heard there is pill form of lovenox, is it true? That would be my luck, soon as it came out, I cant take it

Have a look at this May Thurner Syndrome it may apply to you or not, if you see that it does, mention it to your Dr...
As far as I'm concerned, I have not yet heard of that pill so far.

That is true about what you said concerning the research teams and that they do not seemed to be phased by DVT-PE. When I had my clot in 2007, I was involved with numerous trials (drugs and compression socks) and have learned a lot from those nurse and nurse practitioners then I did from my hematologist (the Dr. are always TOO busy to explain anything, if you ask me).

But have a look at those links and let me know if there are any similarities...

Take care.